Had a small bit of good news - yet it still hasn't chirped me up

[melbourneboybor]

Hi Guys, Wet, windy and miserable - typical Melbourne weather. Hard to believe it's mid November! Just thought I'd touch base with you all. I hope everyone is doing well and getting on with life. I mean - after all - that's all we have right... is to get on with life day by day! Tomorrow isn't promised to nobody. My dad today had results come back from his prostate biopsy and its a bit of mixed emotions. We were all kind of thinking the worst - and its still not the greatest, but my dad feels optimistic. The Oncologist roughly said that he'd be looking at between 12 months and 5 years - of course depending on how things go. My dad admitted he was preparing for a "6 month" or less type diagnosis and I guess there was a part of me that was thinking that too. So I don't know how to really feel about this "12 month or 5 years" type outlook. Of course - I told my dad to still continue with every plan he had about travelling and making the most of it ....and I just pray (not that I'm religious) that the drugs can do what they will and they'll give him his full 5 years. I know that's really optimistic... and if we don't get that time, but my Dad lived his days being truly happy, then it wouldn't bother me as much to say good bye early. I'm such a worry wart. Now I've been worrying that he won't get his 12 months. Ahhh... always thinking and worrying ahead. It's so consuming Ahhhh, the mind games we're all playing. What a time this is for everyone who goes through this. So yeah - 12 months to 5 years. Whatever the hell that means... it is what it is

[Sailor]

Hi Melbourne boy I was diagnosed with an aggressive prostate cancer, probably already metastatic fifteen years ago. I'm still here! Ten years ago I asked my medical oncologists what my prognosis was and he said five to ten years, albeit rather reluctantly. That was ten years ago and I have just started some chemotherapy and everyone os optimistic that I'll be around for another five years at least. I suggest get a second opinion and ask about the full range of options available, particularly some of the newer agents. It may mean going on a clinical trial, but hey that is worth it. Cheers Sailor An incorrectly identified mark is a hazard, not an aid, to navigation. Alton B. Moody

[melbourneboybor]

Hi Salor, Wow - you're truly an inspiration! And I don't mean that lightly - I've actually just read some of your blog posts and I can see you've had a real struggle... but you my friend, well, you are putting up such a fight! Thanks for popping in and giving me some encouragement. I genuinely want you to know that it means a lot to me that you'd take the time to reply! It's early days now and to be honest, I don't know a great deal. I'm torn somewhere between wanting to know "everything" about my dad's battle (and worrying like crazy) - to standing back a bit, being their to support and letting him take charge. So bare with me if I sound naive. Supposedly my Dad's cancer was aggressive and a "9" on a scale of 10. The doctor has told him to lose some weight, eat healthy, the same stuff any Oncologist would say and yeah - 12 months or 5 years... so who really knows. I know tomorrow is promised to no one... so watching my Dad go through this, I'm incredibly proud of him! I believe its metastasised on to some bones or something - it all actually started as he was having pains in his hip/pelvis area and they finally tweaked on to it being Prostate cancer after many many scans. He's on HRT at the moment and according to him, it's really eliminated almost all of his pain. I enjoy hearing that, but know it may not be forever. I believe in 2 weeks time he is having an injection or going on medication that will strengthen his bones... as some of his meds can weaken them. He's being as optimistic as possible. Sailor - you've been a great inspiration and if you can point us in the direction of anything - please, I'd love to hear from you. My dad is 62 for your reference... and I'm half that, at 31. We don't really have a mentor - or a go to person - and I'm not asking you to be that... but I know that having people in a similar situation around him could help. Again - thanks for your reply. I've really enjoyed reading your posts and you've done such a great job putting this cancer at bay!!! (Sorry to use the "Bay" term... considering your a sailor) 😉

[Sailor]

Hi Melbourne boy born in the eighties I was 52 when I was diagnosed with a Gleason 9 tumour. The Gleason score is a measure of how bad the cancer is and is made up of the two worst number from the biopsy. The pathologist scores why they see under the microscope on a scale of one to 5 depending on how bad they look and then the Gleason score is the sum of the two worst scores. Mine was actually 5 + 4 meaning that there were more 5 cells than 4 cells. So far it hasn't made it to my bones. However, the standard treatment is what your father is having - hormone therapy and this will cause the cancer to shrink, hence the pain relief your father is getting. Drugs to strengthen the bones are a good thing and there are also some newer agents that have come out of clinical trials that are very effective against prostate cancer in the bones. That is why I suggested seeing about clinical trials. Your Dad should have a long way to go with lots of different treatments available to help him in the future. Radiotherapy, when it is necessary, is very effective at reducing bone pain. Getting support - several options here. Ring the Helpline 13 11 20 and ask to talk with a cancer connect volunteer. Get in touch with the Prostate Cancer Foundation of Australia as they have a network of support groups. Cheers Sailor My goal in sailing isn't to be brilliant or flashy in individual races, just to be consistent over the long run. Dennis Conner

[melbourneboybor]

Hi Sailor, First off, please call me John :) Thanks for your detailed replies. I can see that you're very knowledgeable in this area - obviously having gone through it first hand. In all honesty - its very new. This has all happened in the span of 4 weeks. Sure the pain has been around for a while for him - but really only 3-4 weeks since we heard the "Cancer" word and actually only today, at 11am, had my dad met with his Oncologist who delivered the news. So you didn't have surgery? The doctors, I believe earlier, used the word "incurable"... and I guess we took that as now a path to ensure we could prolong his life as possible. My poor dad was very nervous about today's meeting. He was truely expecting to be told weeks/months to live and I think he found some optisimim with what has been said to him (If he can hold it off - there is a bit of time for him still left. I'm not kidding or fooling myself - I know that we are still to live day to day and we don't know whats around the corner... but I know today was very exhaustive for both him and my mum as they had a lot running through their minds today. As his son, youngest and really not involved greatly in the decision making - I might mention clinical trials and things to him, but I also wouldnt want to get his hopes up to. How do we have faith his Oncologist is truely doing the best they can. Its such a mix of things right now. I could go on and on - but you know exactly what position where in. Thanks again Sailor

[Sailor]

Hi John For the first part prostate cancer is usually fairly slow growing, with typically the time it takes for the cancer to double in size being in terms of months and years. Do you have some PSA results over time? If you google PSA doubling time there are several doubling time calculators the you can use and the PSA doubling time is a good indicator of the cancer doubling time. For the second part, you are all on a steep learning curve. This is another reason to get in touch with a up port group, there are people there who know an awful lot about prostate cancer, from their own and others experience. In this game knowledge is power. No, I didn't have surgery as the urologist who I saw fifteen years ago recommended radiotherapy rather than surgery, as it may have spread beyond the prostate. In hindsight it was a very good recommendation as I had no side effects until it recurred four years later. Cheers Sailor She said, 'I'm home on shore leave,' though in truth we were at sea
 Procul Harum - A Whiter Shade of Pale

[pmcpmc]

Hi MelbourneBoy I have read a couple of your posts and unfortunately know too well what you are going through and feeling. I lost my dad to breast cancer (metastasised to his brain in the end) after a 7 year battle with various different cancers starting with pancreatic. When he was first diagnosed and after whipple surgery we were told he would not live past 6 months at the most as his cancer was particularly aggressive and wouldn't respond to chemo. We were blessed with 7 years in the end and he got to see my children grow from toddlers to young men. I found it hard to be positive at times, with good news came the reminder of the not so good. I was his main support, as we had no other family in Victoria and he was a widower, myself an only child. It wasn't easy. You might find that once the initial shock settles, the chance to appreciate things and the time you have will return. There will be ups and downs (understatement sorry) but you will find beautiful times amidst the challenges. The one thing I can recommend is that you make sure you support yourself - counselling can help, support groups, this forum of course! Take care of yourself and be kind to yourself. Don't be too hard on yourself when you don't feel like 'appreciating the time you have left' for every day will be different and its OK to feel sad, angry, and every other emotion under the sun. I'm starting to ramble and not even sure this even makes sense! Just wanted to say its tough, but just do the best you can do to tackle each day. Peta